New Person Needing Advice Please!

[Rima1]

Hi,

I'm new here though not new to the symptoms of dysautonomia. I've been unwell since i was 14 and am now 35. I've had various diagnoses of ME/chronic fatigue/Lyme disease (this was contested btw different Doctors). Treatment for Lyme made no noticable difference. I've also been diagnosed with EDS type 3. The neruologist last week said I've never had ME/chronic fatigue but that it's been dysautonomia all along - possibly will a Lyme factor to it. He also mentioned mast cell dysfunction, highlighted the EDS and said something about vascular something... I had autonomic testing last week in London and am waiting for results.

I've been pushing myself physically and mentally for 2 years as I'm trying to train for a job I love. This however necessitates a weekly 7 hour round trip (over 2 days) and working on placement for 1 day a week (should be 2, I can't do 2). I have 2 children aged 3 and 6. Basically though, I'm crashing. I'm finding that i can do less and less and some of my symptoms are getting dramatically worse (fatigue, dizziness). I'm getting episodic numbness in my face/right arm (does this sound like dysautonomia?).

My question is this - does pushing yourself physically/mentally potentially cause long term worsening of illness/does it damage us? Or, when I stop pushing myself will i recover to my normal level of unwell? I'm sensing that i'm asking a question that may well not have an answer. I'm also coming to realise that soon I'm going to grind to a halt and simply be unable to continue.

My hope is that some treatment will be proposed next week that may help me keep going. Is this a realistic hope? I've already upped my salt/water dramatically, but with no noticeable improvement.

Thanks for reading this. It's an incredibly lonely place to be as I find conveying how ill i perpetually feel pretty much impossible to convey.

[Macca]

Hi Rima1

I have found this forum to be an excellent source of support and information - I hope you do too.

In regard to pushing it and crashing: my personal experience has been that I have to be careful to pace myself, and slowly but surely increase my level of functioning. I have found that pushing it is counterproductive and can lead to a longer term set back, which has happened to me on a few occasions. I also have seen an exercise physiologist who specialises in POTS, and he recommends carefully balancing activity and rest, plus ensuring that you exercise. It is hard work as it requires lots of discipline and life gets in the way, especially with young children (I have two very active boys), but pacing has made a really positive difference to the severity of my illness.

Good luck!

[Macca]

Sorry, I should have also mentioned that there is a range of medication options (lots of which are discussed on this Forum, eg Florinef, midodrine & mestinon. For many people it can be tricky finding the right medication(s), but they can certainly make a significant positive difference to your level of functioning.

[corina]

Hi Rima1, welcome to the forums!

[Bigskyfam]

Im a newby too. Welcome. So many opinions and stories here, glad I found this forum. Mine I feel had been looming for at least a year.. Crashed hard oct 5th ill never forget it. Haven't been to work/ grocery store/ kids school events since. Starting lifestyle changes. Dabbling with meds.

[KareBear]

Hi Rima, welcome! One thing you will notice is that we all respond differently to everything including meds and whether we can work or not. For me personally I was in your same position, just starting a job I truly loved but had been pushing myself for so long that I knew inside I wouldn't be able to push much longer. It got to the point I couldn't make it a full week at work without calling in sick at least once.

For me, my doctor was very concerned about the effects pushing myself so hard had on my body. He felt the constant tachycardia that never let up was bad for my heart and causing a cardiomyopathy. So I did have to quit work for both the effects on my health and because I literally could not push myself anymore. I was physically and mentally drained. So I filed for social security disability and I am still on that and wont ever be working again but not working and being home bound has helped my heart and body in general.

There are plenty of people here that can work though with the help of certain meds. And some are able to work more hours than others. It seems to be an individual thing and possibly the cause of your dysautonomia could make a difference as to whether you can work and if your body is affected by pushing yourself.

I think once you et your tests back and see your doctor for possible treatments you may know more about your future. Meanwhile, you have lots of support here! I certainly understand what you're going through! It is a loney place, you are right, but it doesn't have to be as lonely because you have friends here that understand

[Bigskyfam]

Well said medic girl

[Rima1]

Thank you all for your kind responses and warm welcome. Hum, working a full week has never been a possibility but i don't want to flatten myself so much getting trained that i can't look after my kids/work at all. What i can do at the moment is very limited. My university are seriously not being supportive in allowing me to pace myself. Anyway, I need to wait and see what's said at this appointment - thanks again all.

[gjensen]

I would wait on the doctors advice before any real decisions. That said, you know where you have been and are now. You do want to manage your condition well, and you know more what that is like than anyone.

I hope that with some help, you can continue to try to do what you want. Good luck. Keep us updated.

[Aeris5000]

Welcome, Rima1! I am also new to the forums, but lurked for a long time.

I think POTS has such a broad spectrum, it's hard to know what will work and what won't. I've been told that I have a mild case of POTS by the fact that I have never fainted. My EP doctor is not really concerned and just told me to exercise 30 min., 5 days a week, eat salt, drink water, and come back in for follow-up in one year. But my neuro doc, who is my main doctor in treating this, has been trying me on different meds and sent me to cardiac rehab. My med options have been kind of limited as my hubby and I want to have a baby. I also work full-time (with a struggle), so I avoid meds that have side effects that might compromise my ability to work. I'm currently taking 12.5 mg atenolol at night, which helps with the heart rate, but the other symptoms are still there. But I feel that I've gotten used to POTS at this point, and I manage to get through the day.

I have seen some natural improvement in my symptoms and I've been taking more risks. I drag myself through stores and I drive when I feel okay symptom-wise. I did a 15 min. version of my old 2012 Dance Central workout this past Sat. and it was hard - I thought I was going to fall many times and my HR got up to 185 (take that, atenolol!). But I actually felt kind of good once I cooled down, and I knew that I am VERY out of shape. But I want to stress that everyone's different, and I wouldn't encourage another POTS patient to jump into working out like that. My worst POTS symptom is anxiety, and I've read how exercise is supposed to help it. It's getting my body to cooperate that has been hard.

Basically, I've been trying to treat myself like I am normal, but I do know my limitations. I'll take one staircase at a time, but no more than one. I get up and take short walks during work, but I can't do the longer, lunchtime walk with my coworkers. I'm still doing cardiac rehab at the local hospital, which has helped, too. My next goal is to see a movie in a theater again, in time for the next Hobbit film. My noise/light sensitivities have gotten better - maybe not up to snuff for a flashy movie, but I'm hoping!

[Chaos]

Hi and welcome. Sorry for all you are struggling with at the moment, especially while trying to care for 2 young children. That's a full plate you are carrying there.

Like others have said, I think every one of us is different and have different underlying etiologies that play into our symptoms and prognosis. There seems to be a group of people with dysauto who are able to exercise and improve, some stay the same and then there seem to be others who are markedly worse for trying to push exercise and activity or maybe they just get worse over time regardless? Don't know that the stats are really there yet to prove it on a large scale, although in the pediatric population that seems to be the case as reported in a recent study from Mayo.

Personally, despite doing cardiac rehab and pushing exercise at a high level I continued to get worse until I reached a point where my doctor mandated my leaving work to help get my symptoms under better control. That was almost 2 years ago and we're still not there. While we're all different, you and I have a lot of similarities in diagnoses. I think there is some thought that ME/CFS and dysautonomia may all be parts of the same spectrum of disorders. Where exactly EDS and Mast Cell fits in with that, not exactly sure although there are a lot of us with those co-morbidities as well.

Hope you get some answers from your appt.